Sunday, September 23, 2007

Ella had 2 friends over today for a playdate, and they had a lot of fun. Well, maybe the mommies had more fun, but that's okay;) Ella and the other two girls, Kenna (16 months) and Olivia (12 months) all have that extra chromosome in common! We met through the girl's ECI therapist, and it has been so wonderful for me to talk to the moms. We don't get together nearly enough but when we do of course we talk about our daughters. What is so amazing is that all 3 of the girls are doing SO GOOD!! It has especially been good for me because those 2 are so positive and they are uplifting to me! We tried, of course at the end of their playdate, to get a picture of the girls together - which trying to get three 1 year olds to sit still is not easy. They were so tired and had the mouth wide open, I just want to sleep look. My mom wanted me to get a picture of them and send it out to all of the parenting magazines out there, and tell them that we want to see pictures, not just articles, but in advertising and other stories of children with Down syndrome and other disabilities. These aren't the greatest pics so we will have to get together again soon and take a picture from the start!

Thursday, September 20, 2007

My mom called me the other day and said that my cousin had left a message on her answering machine saying that she had just read an article in a magazine about a child with Down syndrome. Woo-hoo!!! I think it bothers my mom more than me but how annoying is it that as a magazine addict (especially any having to do with parenting) I never see a picture of a child that looks like my Ella, or read articles about them? So, we were quite overjoyed and set out in desperate search for Baby Talk magazine, and do you think we could find it, NO! Anyhow, I did find it online and thought I would post it in case anyone missed it! Enjoy. (It says at the end that the author is publishing a book next year about raising her son with DS, can't wait!)A New Song Parenting my son with Down syndrome isn't a trial; it's a joyBy Jennifer Graf Gronenberg

I once read that coyotes howl and yelp to keep in touch with each other, and that their songs are a celebration. I am always surprised when I hear them, songs that are beautiful and chilling and sad and exhilarating all at once. The sound resonates deep within me. The longing, and belonging. Coyote songs remind me of listening to opera — I don't understand it, but I do.

At the end of each summer, my friend Sarah throws a deck party. She invites women from all over the valley; some faces I recognize, others I don't. Early in the night, I find myself speaking with a woman I know only a little bit. She asks what I have been up to, and I tell her about Avery. As soon as I reach the part about Down syndrome — the genetic condition that affects cognitive development and can cause other health issues — she gets what I've come to think of as That Look. It's as if she slipped on a Halloween mask, behind which she retreats as she tries to think of something to say. The woman I was speaking with is gone, and in her place is the yellow smiley-face icon. I instantly feel bad for her. I see that she's struggling. I intervene. "It's okay," I say.

"You must worry," she says, after a moment. "I mean, every parent worries. You must worry."

Her comment is a new one, an observation I had not heard before. Usually it's "I'm sorry" or "You're so brave" or "I couldn't do what you do" or my least favorite, "God only gives those children to people who can handle them." I dislike these remarks for reasons that are obvious to me — I am not sorry, I am not brave, and I don't do anything that any other parent wouldn't do. The last one, in particular, implies that my son is some sort of punishment, or a trial. I don't think of Avery as either.

But tonight, with the summer breeze floating gently across the lake, in the safety of Sarah's warm and friendly home, surrounded by many of my closest friends, I want to give this woman a real answer to her question, not a platitude or a cliché. I think for a moment, and what I feel surprises me. No. I am not worried about Avery.

I worry about my eldest son, Carter — he is gentle and sensitive, which are qualities that I respect but that cause me motherly concern. Sometimes I wish I could teach him to protect himself more, to take his heart from his sleeve and wear it inside, safely shielded by his rib cage. My youngest boy, Bennett, is fierce, and while I admire his daring, it also gives me pause — how will we make it through the teenage years? But Avery? I worry the least about Avery.

One evening, I am reading a book on the couch. Carter wants me to get him a glass of milk, which he can do himself, but he wants me to do it, to stop reading and pay attention to him. I mumble something about "in a minute," vaguely aware that I am raising children who are jealous of their mama's time with books. But I also believe they'd be envious of anything I did that didn't include them, even if it was mopping the kitchen floor, and at least this way, there is a chance that my love of books will be passed on through osmosis. So I continue to read.

Bennett is next, also wanting milk, a copycat of his older brother. In fact, I suspect there might be collusion involved with this second request. "One moment," I say, holding up my index finger, still reading. I am aware that Avery has pulled up next to me. He sits beside me. I am still reading. He sits quietly. I am transfixed, carried away from my life by the sentences of another woman, in another place, at another time.

Carter and Bennett have moved on and forgotten about me, about the milk. Avery strokes my hair. He is there. Avery is still beside me. He is wiggling, or something. I am busy. He is wiggling again. I turn the page. He reaches up, places each of his two small hands on my face and gently turns it from the page toward him, so that we are eye to eye. Then he signs "Milk." He wants milk, too. Where the other boys have given up, Avery has stuck with it. In his single-mindedness, in his desire, in his knowledge of his desire, he has persevered. In his own way. In his own time. Which, as it turns out, is the right time. Time enough for me to lift my head out of my book and give my attention to my children, who, after all, have been very patient. Especially Avery. This is why I do not worry about him. Avery will find his way.

Imagine this: I am at a party having a conversation with a woman I barely know. I mention that I have a child, just a normal child. Would she pull out the smiley-face mask of empathy and pity and confusion? I don't think she would. I think she'd tell me about her children, or if she were childless, about her nieces and nephews. Why is there a difference? Is it so hard to think of Avery as a child, first? Is it impossible to think that in addition to bringing us challenges, he also might bring us joy? Is it so difficult to imagine a life with Avery, who is the first person I know who truly marches to the beat of his own drum? Sometimes I think Avery will find a way for all of us.

So I worry about a lot of things, but not Avery. I try to explain this realization to the woman, but the point is lost. Her genuine curiosity is gone and I am talking to the smiley-face again. It is a party, after all. The sun is warm and glowing and the stars are just beginning to come out.Sarah has lit a dozen white votives in glass jelly jars, and I place them along the railing of the porch. The night is filled with the sound of women's voices, and laughter and music. In the midst of these women, I think of the coyotes. Calling to each other. Finding each other. Belonging. My song is the same as the other women's, mostly. But toward the end, there is a new part. It is a refrain in the key of Avery. I am not sorry. I am not afraid. I like it. It is strange and beautiful all at once, and if you let yourself listen, you might not think you understand it, but you will.

Jennifer Graf Groneberg lives with her family in Montana. Her book, Road Map to Holland, about parenting Avery, will be published in 2008.Babytalk, September 2007

Monday, September 17, 2007

Okay so all of Ella's first birthday celebrations are over, and I thought I made it through pretty good. I was kind of afraid that I would dwell over how much my life had changed in one year and be sad about it. I did occasionally stop and think, "oh this is the day I found out for sure...." "this is the day I had to go be put on medication so I could sleep and not harm myself," etc... but really I did good, I didn't cry and I did keep thinking about how much my life changed but all for the better, and how incomplete my life would be without Ella and Down syndrome.

So, anyhow the party was on Saturday and that night I went to bed with a big sigh of relief, the first year is officially over, Ella is healthy and happy, Hunter has adjusted so well and is just an amazing kid, mine and Chris' marriage survived the trauma and is stronger than ever, we are less than 8 months from getting out of the Air Force and settling down and living be family. Pretty awesome.

Sunday we went to church and as usual we sat next to our friends Jen and Brian and we flipped to the page the Pastor told us to in our hyminal and began to sing. I was singing, but perhaps not paying attention like I should to the words (because Chris was holding Ella who was squirming all around and being noisy,) and my friend Jen leans over to me and says "we sang this song the Sunday after Ella was born, I'll never forget that."

So I look down and the next line says, God makes no mistakes, and I began to cry and of course can not stop. Chris sees me crying and hands me Ella which of course makes me cry harder. I don't know why it effected me so, I know that Ella is no mistake, she was definetly sent here to change me and everyone that she comes in to contact with. But I had to think back to last year and how incredibly devistated I was, and I just knew that God had made a huge mistake because I was not good enough to raise Ella. Oh how a year has changed me. Ella is the biggest gift, a true blessing.

Thought I would share a few of my favorite old pics. This last one is my hubby favorite, it looks like Ella is beating up on her big brother!!

Saturday, September 15, 2007

Today we had a 1st Birthday party for Ella and two of her friends, Savannah and Cana. The girls were all born within 9 days of eachother and since we were all pregnant together we decided to all celebrate our babies 1st bday together. We had a good time. The girls were SO cute!!! Our friend Sarah made cute t-shirts for the girls so they all matched. We had about 45 people there. A huge thank you to my friend Jennifer, Savannah's mom, as she did almost all of the planning and was brave enough to have the party at her house, love ya!!!!

As you can see my daughter is the only one who liked her cake!

And boy did she like it a lot!!

Here is a picture of their awful cake, I say awful because that is how it looked! We ordered it from the commisary and it looked like crap, it was off centered, the letter's were different sizes and it was spaced horribly. Jennifer called me in a panic so I rounded up some scrapbook supplies and we improvised the best we could!

We were so excited to have Ella's friend Olivia come to the party!! Olivia is 5 days younger than Ella and has that special extra chromosome too!! She is SO cute!! It's been a couple of months since I had seen her last and she has grown so much. What's really great is that both Ella and Olivia are very healthy and happy and are pretty much hitting milestones at the same time, they are 2 very amazing girls!!!

We tried to get a picture of Ella and Olivia together, but waited too long. Olivia's daddy had already given her a bottle, (which she holds by herself and Ella absolutly refuses!!!) so we tried to take it from her and she started screaming, it was so funny! So I just got a couple of pics of Ella watching her eat her bottle.

This last one the lighting came out weird but I thought it was cute, Ella looks like a giant trying to steal Olivia's bottle!

Friday, September 14, 2007

or, maybe it is the same one. Ella just went off of antibiotics for a sinus infection last week, and as of yesterday is back on them. Ugh. How many antibiotics can one baby take?? I KNOW that when we go back to the ENT on the 25th he is going to want to discuss taking out Ella's adenoids, which he brought up a couple of weeks ago. Here is my problem with that, my mom met a couple that has a 2 year old with Down syndrome in the Seattle airport, the mom and have emailed a couple of times. Anyhow, she said that her daughter had her adenoids removed when she was 14 months old and has had major swallowing difficulties since, they have to add thickening agent to every liquid they give her. Obviously I do not want that problem. However I also do not want Ella to continue getting sinus infections, the kid has enough problems breathing out of her teeny tiny button nose without thick gunk in it. Poor baby. Along with her recurrent sinus infection has come a lovely rash. Okay, not so lovely, it is covering her entire body from the neck down with a few little dots on her face. It is the weirdest thing, they are not raised and seem to not bother Ella at all, of course that doesn't necessarily mean anything because she is not bothered by most things. The "doctor" on base said that it could mean that she was exposed to Strep but if that is the case than the antibiotic for her sinus' will treat it. Ugh. Also yesterday (boy what a fun day) we went up to Oklahoma City to Ella's appointment with the endocrinologist. The good news is that as of right now he doesn't think she needs to be treated. The bad news is that he wants her retested next week, Ella and her chunky little arms are not easy to get blood out of, but she doesn't cry anyway. So, the doctor said that if her levels are the same as they were in June than we will just need to retest her in a year, if they have gone up again than he will treat her now. Now with all my whining done I have to say that it has really sunk in with me this week how incredibly blessed we are when it comes to Ella's health. Ella is a fat, happy, healthy baby and we are so grateful!Tomorrow is the girl's birthday party, Ella Savannah and Cana all turned one within the past two weeks and we thought we would celebrate together. We are so excited!! So, I will definitely have pictures to post tomorrow!!!

Tuesday, September 11, 2007

Sunday, September 9, 2007

The week is finally over and I am so glad! It started last Friday with us driving to a little town close to Shreveport, LA for a family reunion on my Dad's side of the family. We had a good time, didn't get very much sleep, us or the kids, but we had fun. My dad hadn't seen Ella since she was about 9 weeks old, so needless to say she has changed a lot. I got to see some family that I hadn't seen in at least 10 years and of course everyone got to meet Hunter and Ella. We got home late on Monday and haven't stopped until today. I started Tuesday morning trying to get everything ready for our huge garage sale that we had yesterday. We did really well, made $600, it was in the high 90's outside so that sucked but otherwise it was good and most importantly it is OVER!!!! Here is a picture of my Dad and Ella, and then my Dad, Hunter and my uncle Ted.

This week will be busy, not as bad as last week, but busy enough. My friends and I are throwing a 1st birthday party for our three girls on this coming Saturday so we will be getting stuff ready for that. This Thursday we have to drive up to Oklahoma City for an appointment with the endocrinologist for Ella's thyroid, so I'm interested to see how that goes. Well, that's it for now I'm going to go relax with my family. Here are a few pics of Ella and her baby doll that she got from Hunter for her birthday, she loves it and drags it around on the floor with her and covers it in big slobbery kisses, it is so cute!!!! OH YEAH, I forgot Ella learned how to sit up from laying down this past Tuesday and it definitely makes her much more content to play on the floor, we are so proud of her!!!

My Montage

About Me

I am a mother to two incredible children. Hunter is 8 years old and Ella Grace is 6 years old. My children are my life, my true joy. My life was turned upside down when my daughter was born and surprised us all by having Down syndrome. Since her birth I have come from sorrow and a sense of loss to greater happiness than I ever imagined and I owe it all to The Amazing Ella Grace! Contact me anytime by email fbkspeach@yahoo.com

Down Syndrome Creed

My face may be different,but my feelings the same.I laugh and I cryand take pride in my gains.I was sent here among you to teach and to loveas God in the heavenslooks down from above.To Him I'm no different,His love knows no bounds;It's those here among you, in cities and townsthat judge me by standardsthat man has imparted,but this family I've choosenwill help me get started.For I'm one of the children,so special so few,that came here to learnthe same lessons as you.That love is acceptance, it must come from the heart;we all have the same purpose,though not the same start.The Lord gave me lifeto live and embrace,and I'll do it as you do,but at my own pace.-Unknown